HERTS VALLEYS CLINICAL COMMISSIONING GROUP

WHAT DOES A “PATIENT ENGAGED ORGANISATION” LOOK LIKE AND HOW DO WE GET THERE:CLINICAL AND STAFF PERSPECTIVES IN SHARED DECISION-MAKING AND INFORMATION GIVING

FINAL REPORT VERSION 1.0

05.08.11

CONTENTS

Page
Introduction and background / 3
How best can we build support for shared decision-making and information giving in routine NHS care? / 4
How can commissioning maximise patient involvement in their own health and care, considering shared decision-making and information-giving as outcomes, and how might these be reflected in commissioning specifications? / 14
How can we build an understanding that shared decision-making is part of the same paradigm as personal health planning, supported self-care and the wider personalisation agenda (no decision about me without me), that is a key priority of government - in order to support spread and implementation across regional systems? / 17
Conclusions and Lessons Learned / 19
Appendix I: Project plan
Appendix II: Example material from Manor View
Appendix III: Draft PPI structures showing links with social care commissioning

Version control

Number / Author / Date / Action
1 / JT / O4.08.11 / Sent to Nicolas Small (interim chair)
1 / JT / 05.08.11 / Sent to Sarah Walker

What does a “patient engaged organisation” look like and how do we get there: Clinical and staff perspectives in shared decision-making and information giving

Introduction and background

Herts Valleys Clinical Commissioning Group (HVCCG) put in an application in February 2011 to the Strategic Health Authority for funding to support clinical and staff perspectives in shared decision making and information giving.

The brief for the project was framed around three questions:

  1. How best can we build support for shared decision-making and information giving in routine NHS care?
  2. How can commissioning maximise patient involvement in their own health and care, considering shared decision-making and information-giving as outcomes, and how might these be reflected in commissioning specifications?
  3. How can we build an understanding that shared decision-making is part of the same paradigm as personal health planning, supported self-care and the wider personalisation agenda (no decision about me without me), that is a key priority of government - in order to support spread and implementation across regional systems?

The timescale for the project was 12 weeks. In order to explore each question above a number of activities were initiated. This report provides a picture of the progress that has been made. The report is organised around the three questions above as these formed the basis of the project plan (see Appendix I).

Question 1: How best can we build support for shared decision-making and information giving in routine NHS care?

SCOPE

Our perception of Question 1 was that integrating shared decision-making and information giving in routine NHS care, requires that clinicians in general practice are involved in shared decision-making with individual patients and groups of patients, and that a culture of making sure that patients are enabled to make informed choices should be embedded throughout the patient experience of primary care.

Three strands of work contributed to answering the first question:

  1. The first strand of work was to identify best practice at clinician level so that we could identify practical steps that clinicians are already taking to increase patients’ involvement in their own health and care.
  1. The second strand of work invited GPs to trial work on shared decision-making with discrete groups of patients so that we could focus work to increase our understanding of the barriers and facilitators to shared decision-making, which we can then apply across wider groups of patients.
  1. The third strand of work was:
  • To map existing patient participation groups and provide support for those practices that do not have a group.
  • To evaluate the development of patient resource hubs in practices where they exist, which will be a focal point of information for patients to promote shared decision-making with a view to rolling this model out to all 65 practices.
  • To pilot engagement ‘Champions’ in 1-2 practices across each locality (we have had huge success with Carer’s Champions which this system would be modelled on), again with the intention of evaluating and rolling this out across the Clinical Commissioning Group.

PROCESS

For the first strand of work, practices were asked to provide examples of shared-decision making to the project manager. A document asking for expressions of interest for strand 2 and for the engagement champion work (part of strand 3) was prepared and circulated to all practices within HVCCG.

Four practices were approved by the HVCCG steering group to pilot shared decision-making (strand 2). Table 1 shows the scope of the pilot.

Table 1

Practice: / Davenport House Surgery
Summary: / Working with residents in a home run by Mencap, and their carers to support better access to health and health related issues
Outcomes: / To enhance access to care for residents by increasing their understanding of health and health related issues.
Practice: / Holywell
Summary: / Working with people with long term conditions to pilot a patient held record which would be brought to each consultation. The record will include a current summary (including medication); recent values; management plans agreed with the patient; medication information; a diary e.g. when bloods are due to be taken, reviews; and a healthy living section.
Outcomes: / To empower the patient by ensuring that they have information to enable better shared-decision making, to aid compliance, to minimise unnecessary visitsand streamline delivery of chronic disease management.
Practice: / Maltings Surgery
Summary: / Working with people with Type 2 diabetes to review their knowledge of their treatment and perceptions of their involvement in decision making about their care
Outcomes: / Better understanding of how people with Type 2 diabetes understand their condition so enabling the practice to identify and provide information and resources to meet actual rather than assume individual needs.
Practice: / Schopwick Surgery
Summary: / Working with patients with Parkinson’s disease, this pilot will first ensure that an up to date directory of available resources is available to ensure that shared decisions only look at realistic options. Each patient will be invited for review after the directory has been completed.
Outcomes: / Complete review of the needs of a discrete group of patients and discussions on an individual basis with the patient to decide together most appropriate courses of action.

In order to share the outcomes of the pilot work, practices involved in the pilot were asked to submit case study examples and other information that would be helpful to others derived from their work.

Seven practices were approved by the HVCCG steering group to pilot ‘engagement champions’. Table 2 shows a summary of the action plans for the engagement work (strand 3).

Table 2

Practice: / Davenport House Surgery
Actions: /
  1. To print a leaflet and posters advertising the Patient Participation Group. Leaflets will be stapled to repeat prescription requests. Membership forms will also be available.
  2. To maintain a collection box at reception for patients who do not have access to email and mail copies of newsletters and membership forms to these patients.
  3. To support a large group meeting in July for patients around health reforms and on-going smaller events around patient identified health topics.
  4. To promote the Patient Participation Group to younger patients.
  5. To support the development of an email database through which to aid communication of events and general discussions of surgery developments.
  6. To support the development of self-management information for patients.

Practice: / Maltings Surgery
Actions: /
  1. To analyse in detail the demographic profile of the practice population and attendees at the practice.
  2. To form a patient representative group ideally reflecting the age, sex and ethnic profile of the practice. The PRG will be advertised via posters and through the practice website.
  3. The intention is to enable the PRG to be part of the design of a programme which is likely to include:
-Update of the practice website and explore Twitter feed to share in a transparent way the pressures that practices face.
-Self-care and signposting to make the website the first port of call for patients seeking information. An audit of urgent appointments and home visits will support tailoring of information. Links to NHS Choices self care pages.
-Information on GP areas of speciality so that patients can make choices about which GP to see.
-Management of long term conditions - to include a written management plan and information about what to do if a condition worsens.
-Identification and individual review by a named GP of frequent attendees.
-Seminars/events/small group networks on specific conditions.
Practice: / Highview Medical Centre
Actions: /
  1. To develop the practice website with links to outside organisation, self-help groups, patient choice, NHS Direct. The website will allow direct communication between GP, nurses, practice staff and patients.
  2. To provide self-help advice for common minor illnesses and over the counter medication advice through the website.
  3. To develop the Patient Participation Group.
  4. To support patient education events for the practice population publicised through the website, mailings and newsletters.
  5. To develop e-newsletters and support a Practice Twitter.
  6. To develop a Practice Facebook.
  7. To promote self-management programmes and exercises to alleviate common musculo-skeletal problems.

Practice: / Schopwick Surgery
Actions: /
  1. To promote the Patient Participation Group through the development of information and targeted mail-shot.
  2. To develop material for the practice website to enable communication with patients and opportunity for patient feedback on our services and other services that patients have accessed.
  3. To support the Parkinson’s shared decision making pilot with a view to rolling the model out to other groups of patients.
  4. To be a resource for other members of the practice team around patient engagement.
  5. To liaise with other practices to identify good practice that can be brought to Schopwick.

Practice: / Bennetts End
Actions: /
  1. To reach out to patients, remembering those who use and do not use the service, by utilising a variety of communication methods and promoting the Patient Participation Group, including reaching out to the wider community with virtual PPGs providing the opportunity for patient feedback on our services.
  2. To develop material to enable communication with patients with sensory impairment, and to promote learning to increase the awareness of practice staff for effective communication with this discreet population.
  3. To explore and, hopefully, set up and run a clinic, - by one of themanaging partner/Management Assistant/Head of Reception/Reception team leader(s) and a member of the Patient Participation Group – where patients can discuss the services, improvements and becoming involved.
  4. To be a resource for other team members in Practices within Herts Valley Clinical Commissioning Group.
  5. To liaise with other practices and networks, e.g. the National Association for Patient Participation and the Royal College of General Practitioners to identify good practice that can be shared at Bennetts End and with other practices across the HVCC.

Practice: / Manor View
Actions: /
  1. To promote the Patient Participation Group through the development of information.
  2. To develop material for the practice website to enable communication with patients
  3. To develop a practice questionnaire that is useful and meaningful to the practice and patients equally.
  4. To be a resource for other members of the practice team around patient engagement.
  5. To liaise with other practices to identify good practice that can be brought to Manor View.

Practice: / Holywell
Actions: /
  1. To promote the better use of advance care planning for people with dementia in care homes.
  2. To develop a robust process to ensure that documentation around the wishes and preferences of people with dementia is known about and adhered to, particularly in an emergency situation. This should include DNAR wishes and LPA.

A simple evaluation framework was developed for practices to report on the patient engagement champion work. The framework (see Table 3 below) asked for progress and information against each of the actions:

Table 3

Action / Progress / Information
E.g.
To promote the Patient Participation Group through the development of information and targeted mail-shot. / E.g.
Information and promotional material produced. Available on practice website and mailed to x people. / E.g.
Leaflet attached. Website link is *****

Work on mapping existing Patient Participation Groups (PPGs) was undertaken with support from the Patient Engagement Manager at NHS Hertfordshire.

The development of the resource hubs is being piloted in one of the localities of HVCCG. Hubs can be actual or virtual. As some of this work is embryonic the evaluation focused on those practices which had well established patient information hubs, so that good practice could be shared. Further evaluation will be on-going and shared across HVCCG.

OUTCOMES

Audit of existing shared-decision making best practice

We received only one example of good practice about shared decision-making on an individual basis, although anecdotally we believe that more good work is taking place. The one example from Annandale Surgery, is the development of self-management plans for people with Chronic Obstructive Pulmonary Disease (COPD), which includes an ‘emergency pack’ with steroids and antibiotics with discussions and written information about when to initiate these, plus a booklet which discusses breathing exercises, nutrition, general muscle exercises.

We did receive data about work with groups of patients. For example, one Davenport House Surgery has held evening events on prostate cancer, depression, foot problems, diet, gastro-enterological problems, menopause, incontinence and breast cancer. Two GPs from the practice have given talks at the local children’s centre to encourage self management and awareness of services. Parkfield Surgery offer similar events and have recently offered talks on Dementia and reconstructive surgery, with a further event planned in October on hip and knee surgery.

Shared Decision-Making Pilots

The shared decision-making pilots are underway. Progress reported to date is provided below in Table 4:

Table 4

Practice: / Davenport House Surgery
Summary: / Working with residents in a home run by Mencap, and their carers to support better access to health and health related issues
Progress: / Awaiting report
Practice: / Holywell
Summary: / Working with people with long term conditions to pilot a patient held record which would be brought to each consultation. The record will include a current summary (including medication); recent values; management plans agreed with the patient; medication information; a diary e.g. when bloods are due to be taken, reviews; and a healthy living section.
Progress: / Awaiting report
Practice: / Maltings Surgery
Summary: / Working with people with Type 2 diabetes to review their knowledge of their treatment and perceptions of their involvement in decision making about their care
Progress: / A group of patients with diabetes on drug treatment have been randomly selected and asked to participate in the pilot. A questionnaire has been circulated which asks:
  1. Do you feel actively involved in the decisions affecting your diabetes treatment?
  2. Do you feel you have a good understanding of diabetes as a condition?
  3. Do you feel that the doctor or nurse listens to your concerns when you come to see them about your diabetes?
  4. How can we make you feel more involved in the decisions taken around your diabetes care?
  5. Do you feel you know enough about your repeat medication and why each item is prescribed?
Results from the survey are still being received by the practice. Data will be analysed when all returns are received with a view to making any changes which might benefit shared decision-making, such as the use of aids, being given links to specific types of information, more continuity or attending educational sessions.
A diabetes review template has been developed which provides information about blood sugar control, weight, blood pressure, cholesterol and lipids, aspirin, kidney damage and albumin creatinine ratio, eye checks, flu vaccination. Ideal and acceptable targets are specified and an agreed action plan for each element of the plan is formed.
Practice: / Schopwick Surgery
Summary: / Working with patients with Parkinson’s disease, this pilot will first ensure that an up to date directory of available resources is available to ensure that shared decisions only look at realistic options. Each patient will be invited for review after the directory has been completed.
Progress: / Patient information pack completed including local and national information.
Searches of patients completed and all patients have been invited for review.
Meeting arranged for patients with speakers including a consultant, nurses and the Parkinson’s team from a nearby specialist centre.

The pilot sites have found the timescales very challenging. However, we anticipate that case study material will be available over the next few weeks.